At diagnosis, my son had been able to speak, then dropped the skill.  He was nonverbal, withdrawn in his own world.  He had no way to share that world with others.  The scariest part, at that time, was not knowing how much was going on inside his head.  My intuition told me he had a whole other world in there, thinking his thoughts all the time, but I had no tangible proof of that. 

After we started oral motor therapy, he slowly started talking.  So many surprises were in store.  Within weeks, he showed us that he already knew the alphabet, and started recognizing words.  He could count up to twenty.  When he talked, though, it was always very repetitive and singsong.  It was easier for him to almost sing the words than talk normally.  The same thoughts kept me awake each night.  Is this what speech is going to be like for him?

For the benefit of others in the early stages of diagnosis, I thought I’d give some examples of what our life looks like right now.

My son is now seven years old.  He’s able to have conversations about things that he’s interested in, but topics of non-interest are still very difficult.  He’s getting better with socializing with others, but his first love is any electronic gadget.  He’s exceptionally earnest and straightforward, but surprising.  Here are some of the conversations we have.

I asked my son to draw a sign for our front door that reads “Knock loudly, we’re downstairs.” That’s all I needed, because people are coming over to play board games and we need to be able to hear them to go let them in.

1st sign: “Knock loudly, if we don’t answer, please come back later.”
2nd sign: “Knock loudly, this is <our address>, if this isn’t where you were going, please go away.”

I tried standing next to him having him write one word at a time, but, in a super serious voice, he started arguing that it should read “…IF we’re downstairs, we may let you in.”

 ‎”Son, hand me the paper, please.”

We have signs in every room of our house. He also made a sign outside our door asking others to “Please ring our doorbell.” We don’t have a doorbell.  He drew one on the sign.

Earlier, he had kept mentioning his story.  “Mom, my story began on <date of his birth>.  I am halfway through my story.”

“Honey, you’re only seven years old.  This isn’t the halfway point.  God willing, your story is still just starting.”

He looked at me with concern.  “But Mom, your story is almost finished!”

My husband has made sure that my children are fully acquainted with ’80′s arcade games.  My son takes those characters and draws comic strips with them.  These stories are straight from his head, and different from anything he’s seen.  He draws himself as Pacman, the good guy.  This morning, he was talking about Pacman’s enemies.

“My first enemy is Knuckles, the Echidna.  My second enemy is Sonic, the Hedgehog.  Miles Tails per hour is my third enemy.”

In one of his comic strips, it shows a very happy (and accurately drawn) Pacman with thought bubbles of math problems while kicking his enemies.  He happily kicked Sonic off a cliff, making Sonic self destruct as he drops into the ocean.  The next frame is a closeup of Pacman, solving a multiplication problem (Did I mention my son is seven?).  The next image cuts to the pieces of Sonic, floating in the water (in a very cartoony, non-gory way).  Sonic’s head drifts by, saying “Um, put me back together, please.”

One of my son’s favorite topics is discussing birthdays, and how old everyone is.  He loves math.  It’s been difficult to get across that not everyone wants to have their birthday and age brought up to complete strangers. 

“Mom, how old will you be when I’m 16?”

“I don’t know, son, how old will I be?”  I refuse to do mental math.  My son and husband are so much better at it and are readily available, so they tend to be my calculators.

A look of shock passes over his face.  “Mom, you’ll be 45!”

My son is enamored with squeezing my arms.  “Mom, I love your arm fat.  You’re a fun toy!”  As my son and husband were walking through a store, my son announced ”Dad, look at her arms!  That lady looks like she would be a fun toy, like Mom!  Except this lady’s skin is a different color.  Mom isn’t so dark.”  We’re working on understanding that observations, while being true, shouldn’t always be said.  Most folks who have arm fat likely don’t want it, and talking about it can make them sad (a concept that bewilders my son, he gets excited talking about how some day he’ll have his own arm fat to play with, any time he wants). 

It’s important to bear in mind that there has never been any malice intended with any of these conversations.  It’s difficult to get both my children to understand how others may react negatively to what’s being said, or that others may not consider having a huge bottom to be a good thing.  They are very honest and matter of fact.  They understand that saying please and thank you are ways to be polite.  They just don’t understand how other statements aren’t polite, even while being true.

This is something we’re working on.  I don’t despair over my children’s differences as much as at first, because I’ve seen them succeed over what was previously insurmountable.  We laugh a lot more, now.  I can tell my children that I’m confident they can figure this out, just keep trying.  They are both exceptionally bright.  The more they experience, the more they figure out. 

Yes, the social part of communication is still difficult, but we can work on that.  My children are exceptionally unique, and while that can be difficult, it also holds huge promise.  With having myself and my husband as parents, it’s not all that surprising that my children are quirky.  What makes each of us different can also be unique teaching opportunities. 

That’s not easy to see in the first stages of diagnosis, when so much is unknown.  Keep a journal.  Write down what today’s struggles are, and get your feelings down on paper.  Keep every written evaluation for your child.  The reason I say this is because most progress is going to be a series of tiny steps.  When (and if) the huge bursts of understanding come, they fill you with joy, but there will be long dry periods.  Guaranteed. 

If you don’t get reality down in writing, you’re missing the opportunity to be pleasantly shocked later at how far your child has come.  Tiny steps make huge changes over time.  If you don’t pay attention, you miss the opportunity to be blessed by this.  To be effective parents, we have to model how to cope with the challenges autism brings.  If the adults can’t cope, how will the children ever learn to?  You can do this.

Just some thoughts.

What we would normally do to sooth people or cats and dogs doesn’t really apply.  It’s not productive to pet a fish, and I don’t recommend it.  Taking them for a walk is definitely a bad idea, so don’t try it. 

It’s more about figuring out what they really want to do, and find ways to provide for that without disrupting the rest of the community.  Once you know what they want, you have to find ways to introduce it as unobtrusively as possible.  It’s an interesting life skill to practice.    

Going to the pet store to slowly add more fish was initially overwhelming, but has become an activity that we enjoy as a family.  We started with platys, and have since added fancy guppies and cory cats.  There’s another type of catfish that likes to attach his face to the glass (and other various surfaces) with a huge name I can’t pronounce.  He does the same thing as a plecostimus, but is much cleaner and will only grow to 2-3 inches long instead of 12. 

My children love to sit by the aquarium with me and figure out where any fish that are hiding may be.  Sometimes they’ll make up stories to explain what the fish are doing and why.  It’s a different way to incorporate social stories into our leisure times.  Our most rewarding times together with the fish are often just the opportunity to watch my children watch the fish.  I ask them questions about how they think the fish feel and why, which is much simpler for them to reason out than trying to figure out what another person is feeling.

It’s another simple way to introduce life skills that’s often less overwhelming.  There’s nothing like experiencing tiny successes to build confidence that they’ll be able to have more substantial successes.  Even if its something as small as in figuring out what a fish would prefer.  We don’t work on empathy with fish instead of empathy with people, it’s in addition to.  It’s a fun tool to keep building my children’s understanding.  

My daughter is going through a princess phase, so there’s a large pastel castle in our aquarium.  The fancy guppies are the king and queen of the castle, and both children are especially fascinated with the cory cats, our “denizens of the caves”.  My daughter’s first reaction to the cats was “Mommy, he’s blinking at me!”  My son especially delights in the “silly catfish” that keeps sucking on the glass. 

It’s odd how the addition of a fish can completely change the environment of the tank.  Adding the guppies has certainly livened up the entire tank (and I think the female started showing gravid spots, i.e.- pregnant, before they were even taken out of the bag).  The male still won’t leave her alone, though.  He’s currently trying to seduce the castle with his little mating dance, odd little fellow.

I think one of the platys is pregnant, too.  I’m wondering if I should set up a “vacation spot” for the pregnant girls to take a break from the over-amorous attentions of the boys.  Guppies and platys are live-bearers, and adults tend to eat their young if they’re too noticable.  I could have the girls on vacation until they give birth, then keep the small “fry” (yes, this is where the term originates from, btw) separate until big enough not to be eaten.

We’ll see how it goes.  Just some thoughts.

The reason I started this blog was, ultimately, to facilitate personal growth in a way that might be meaningful to others.  I’m fairly adept at avoiding talking about my own thoughts and feelings, it’s just so much easier to listen to others.  Having to type out a post would require me to actually put my own thoughts out there, into the ether, and has the built-in accountability of providing content to any readers willing to read it. 

First, I had to get comfortable with the fact that blogging in first person means that I have to type “I” and “me” on a regular basis.  You’ve no idea how weird this felt.  In papers written in school, I’d spend hours finding ways to reroute the written words to avoid having to use personal pronouns.  There are various reasons for this.  Regardless, blogging forces you to step out of your comfort zones.  

I am, by nature, an introvert.  Someone described me once as a right-brained hermit who likes to peek out at the rest of the world from time to time, then retreat to the safety of my colorful inner world.  After a lifetime of irritating others with my daydreaming tendancies, it came as quite a shock to realize that people might actually enjoy the inner workings of my head.  Eventually, I found that I could accept that others can enjoy the fun, creative notions that delight in taking residence in me.  Accepting that others can handle the less-fun darker dramas that tend to lurk has taken much longer to wrap my head around.   

When my son was diagnosed with Autism, I didn’t share many of my thoughts and feelings with anyone.  Whenever I thought about it, I’d feel guilty that I’d be loading someone else with all the crap that was too much for me to handle.  Why should I overload someone else with all this uncertainty over what my family’s future will look like?  When I’d finally get to the point where I had to say something, I’d have an “angst-xplosion” all over whomever was nearest.  Typically, this was my husband. 

 Eventually, once I found out what exactly a blog was, it occured to me that this may be exactly the outlet that was necessary.  All my ramblings and angst would be available for sharing, but choosing awareness of them would be completely at will.  Blogging seemed like the perfect outlet, and in many ways, this is a true statement. 

The problem is, blogging is not a replacement for actually having a real, live conversation with another human being.  Typing out my thoughts is enormously therapeutic, and I can tell when I’ve gone too long without doing so.  Regardless of how introverted I may be, at some point I do need to interact with another human being.  This sounds like such a simple notion, but it’s odd how floored I can be by the simplest of notions. 

So, my Mommy’s night incorporates both notions tonight, in a cool coffee house environment.  I have to say, this is fun.  Definitely something we’ll need to do again, soon.  Finding ways to merge “introspective” with “relational” isn’t the easiest task to accomplish, but I’m discovering it’s very necessary for my own stability.  As with so many things, balance is key.           

I have been negligent in updating my blog, recently, but I do have good reason.  A good friend of mine mentioned that she enjoys reading my blog so much, she wished that I’d write a story,… and that’s what I’ve been doing.   It’s not finished by any stretch of the imagination, but I’m discovering that the process of writing is very enjoyable.  As long as I treat it like a process and don’t expect every word to come out golden from the start, that is.  We’ll see where it goes. 

Just some thoughts,…

Faster than a somnambulant preschooler trying to go potty in the hallway, who’s convinced she’s already on the toilet,… more powerful than an airborne first grader, who completely trusts you’ll catch him as he takes a flying leap at you from the top of the stairs,… able to leap an obstacle course of ankle-breaking toys scattered across the floor in the dark,… it’s SuperMom! 

Why is it that I still expect myself to get everything done that I did as a stay home mom while I’m now working full-time?  Case in point: I’ve been offered a full-time position at my job, where I’ve worked as a temp since September.  Part of the process involves presenting all the required identification.  This wouldn’t be a big deal, except that I’d lost my social security card. 

At first, I didn’t let this phase me.  It shouldn’t be too big of a hassle to get it replaced.  I tried calling the department that handles replacements, but couldn’t get an answer.  They mentioned that I could present my birth certificate, but that’s gone missing, too.  So, in this age of information, I googled social security card replacement.  What I found was troubling. 

I work Monday through Friday, and the office is only open while I’m at work.  Attendance is a huge deal at this job, so I couldn’t ask for time off to get it done, and if I did, I’d probably have to take multiple trips to Social Security, because I had no idea what they would accept that I have.  To get a replacement birth certificate instead, I’d need to drive out of state during work hours, or order by mail and wait 3 to 4 weeks (when this needed to be presented as soon as possible).  There are all manner of online services that are willing to get you an “authentic” birth certificate in 2 to 3 days, for an exorbitant fee (and I’m not really comfortable with the security issues of paying some entity all this money while giving them a copy of my driver’s license).  

My brain is combusting, trying to figure out this story problem that doesn’t have any satisfactory solutions, and all the while, I’m uber-paranoid of mentioning any of this to my husband.  Not because my husband is scare-worthy (although I was fairly certain there would be eye-rolling and a lecture on how this would have been easier if I’d taken care of this sooner), but because I was a stay home mom for three years.  During that time, I ingrained it into my brain that since John worked all day I had to be able to get done whatever needed done in daylight hours.  I haven’t had the option for someone else to be able to help with this sort of thing, so it didn’t even occur to me.  All I could grasp was that this meant that I’d have to somehow do the impossible.  I didn’t know if it was a small issue, if it meant I was going to have to just wait to get hired on, or if it meant that I would get fired for not being able to provide proof of my employability.

Several panic attacks later, I finally worked up the nerve to talk to my husband about it.  Less than a minute into explaining, John tries to make a comment and I just about bite his head off.  “You do not understand, I’ve thought this through and I have zero options,… so let me explain how every avenue I’ve looked into doesn’t work,…”  Finally, in tears, I’ve gotten through all of it and feel like an absolute failure because I wasn’t somehow able to heroically solve the problem on my own.  “Can I talk now?” my husband asks.  “As I tried to tell you at the beginning, since I’m now a fulltime student, I’ve got several hours between my morning class and my evening class where I could go to the social security office for you and see what has to be done.  It’s when I’d normally be studying, but I could rearrange some things, because this is important.  I know you have zero flexibility since you’re working, now, and that’s okay.  I don’t expect you to be able to do everything that you did as a stay home mom.  I know it’s a huge mental shift, but you’ve got to learn how to be okay with letting others help you, now.”

Oh.

So, I offer words of wisdom to all the other potential SuperMoms out there, trying desperately to do it all on their own:

“Learn to share the cape.”

Just some thoughts, …

What is wonderful, though, is realizing how much more my children could cope with on their own this year.  Seeing the differences in what they can do, and who they each are, in comparison to the year before, and the year before that is inspiring.  

All anyone can tell me about my children is what has been observed in the past, and what is observed today.  No human being can say what has gone on inside their heads in the past or the present, or say what they’ll be able to do or think in the future.  There is so much hope in that! 

After having sickness make the rounds at our home, our holiday traveling was more abbreviated than it’s been in the past.  Thankfully, we were feeling well enough to still make some visits.  It did leave some extra time in our schedules to just be family in our own homes.  I treasure those moments of watching my children play together, and each of us just getting silly together. 

It can be easy to get caught up in trying to be “normal”, to feel that we’ve been successful at parenting if our children are able to cope with following traditions, or learn how to be just like everyone else and react in typical ways.  It is an important life skill to be able to cope with what this world throws at us, and to be able to engage others in meaningful ways.  We forget to treasure and enjoy what makes each of us different,  though.  We don’t always remember to nurture that which makes us unique.  As parents, we have to walk a delicate balance.  We have to teach our children to be able to function with others, but we’re not always successful in demonstrating that being different is not the same as being bad or wrong.  It’s just different. 

If we don’t give ourselves time to enjoy our own differences, we may be ignoring some of the best parts of ourselves.  This is where balance is so integral.  Too much inward focus and we lose sight of what’s going on around us, and miss out on our opportunities for relationships and chances to grow.  Too little inward focus, and we lose sight of who exactly we are when we’re not surrounded by other people.  Too much looking in, and we’re just looking at ourselves in the mirror, not seeing the beauty that’s beyond our nose.  Too little looking in, and we just become the mirror.

Must sleep now.  Just some thoughts.

It’s beautiful to be a part of, and is thrilling to see.  First and foremost, the most important part of what we do is helping others to worship together.  It is pure pleasure to get to see others lose themselves in drawing close to God.  All the preparation, planning, and practicing is how we serve.  The actual gatherings with the people are where we get to be refilled and refreshed, too.  Its less about “performing”, and more about sharing an experience.

There is so much diversity in the styles of music played, the variety of instruments we use, and the different voices that create so many different feelings and emotions.  Its so inspiring to see musicians willing to try new instruments and play in new ways.  Seeing the personal growth of each person involved in the process is amazingly fulfilling. 

I’m so thankful to get to be a part of this.  Just some thoughts,…

It’s a children’s show devoted to teaching sign language to children and their caregivers.  It was started by a mom named Rachel whose daughter Leah was born deaf.  They started teaching Leah sign language at a very early age.  When Leah’s cousin Alex was born, they started teaching him sign language, too, so that he’d be able to converse with his cousin easily.  Both families were surprised with how quickly the children were picking up ASL.  They were able to convey thoughts and feelings before most children are able to talk.

As time went on, Rachel was frustrated with the dearth of children’s programing available that used sign language.  What would it look like to create a children’s show that builds a child’s vocabulary through sign language?  And thus, a delightful show called “Signing Time” was born.  Rachel, Leah, Alex and a cartoon frog called Hopkins teach sign language to children in fun colorful ways. 

This show was very meaningful to me.  I’m surprised that just typing about it brings tears.  Firstly, my son loved this show, and would have all the words and signs memorized after his second viewing of an episode.  At a time when his speech was quite delayed, this was a big deal.  Secondly, though, this was a mom and her family that recognized something beneficial for her child, and found a way to easily share that discovery with the world.  This show gave me motivation to keep finding creative ways to help my children learn how to learn. 

Special ed classes across the country use her dvds to enrich their children’s grasp of vocabulary and learn a way they can communicate with the rest of the world.  Parents use the show to learn along with their children, and help them catch up developmentally.  Infants watching the show pick up signs to communicate and ease frustrations before they are physically able to speak. 

At the time my son was first diagnosed, I didn’t have a lot things that would motivate me.  It can be very easy to get overwhelmed and feel there’s nothing you can do, so why try?  Thankfully, my husband found this show and started recording it for us.  I say “for us” because I needed this show just as much as my children did, just for different reasons.  In watching the show, I started figuring out the relationships between the characters, realizing that this was something a “momprenuer” had created.  After pulling up their website (   http://www.signingtime.com ), I found out more about this inspiring family.  I realized that Rachel has two children with special needs, and somehow still manages to create this labor of love with her family.

When you find yourself in a dark place and come across something that inspires you, that motivates you to do more than just settle for the hand you’ve been dealt, hold on to it.  This is just one of the things I’ve found in this life that inspires me to do more than I would, to be more than I am.  I just wanted to share it with you, … maybe it’ll inspire you, too.  Just some thoughts,…

The Wii game system has been an amazingly positive experience for our family.  As you play the games, they require you to move, often in ways similar to what you’re trying to accomplish on the screen.  Motor skills are something that my children have worked hard on, and nothing is a substitute for working with real sports equipment and physical items.  What Wii excels at is giving the chance to get familar with similar motions, experiencing success once you’re familiar with the motion required, and building confidence and social interactions, since you’re able to play with other people on a more level playing field. 

For instance, if  my children go to a bowling alley, they are going to be very limited in how they will be able to play.  The physical weight of the ball, while an excellent sensory experience, makes manuevering that ball difficult.  Its hard to make any contact with the pins.  That doesn’t mean they shouldn’t play, because the only way to build strength and coordination is to keep practicing.  The difficult part is that most children on the autism spectrum have to deal with a lot of frustration.  Things that are easy for other children their age are more difficult for them.  When they try to do something that is hard for typical children to do, it can feel beyond impossible for these special kids to ever achieve.  It is difficult to stay motivated to try when it seems like it isn’t possible to succeed.  

What’s nice in adding the game Wii Sports into the mix is that, using the same arm motion without all the physics, strength and coordination involved, children can be successful, quickly.  They can play the same game with other children, teens or even adults, and be competitive.  They can often play the games unassisted, giving them a taste of independance.  Should Wii games be the only source of play a child has?  No.  Adding it to therapies and play activities can be a very rewarding experience, though, and may help in reducing a child’s frustration.

We’ve been particularly excited about the Guitar Hero and Rock Band Games.  My children have always responded to music, more so than any other kind of stimulus.  Being able to sing along with the lyrics, play the guitar, and/or play the drums has brought out sides to my children’s personalities that we otherwise would not have been aware were there.  The desire to sing in front of others has opened avenues of social interaction, even with people they barely know.  Both children have amazing memory for lyrics when compared to other typical children their age, and  these games give them a chance to have fun while developing their musical aptitude. 

The Wii game system isn’t some kind of magical fix, and won’t suddenly make a child on the spectrum lose the issues that that caused them to be diagnosed.  It can be an excellent tool for the whole family to play together.  Its fun for everybody, and has some very beneficial side effects when used strategically.  My son’s autism class at school got a Wii to use with the whole class (giving a good reason for taking turns, being comfortable trying a game in front of peers, and social interaction, especially while cheering for their peers).  Certain games can also build math skills and identifying objects, colors, shapes, etc.  It’s benefits are most pronounced when its played in groups.

Just some thoughts,…

Since I’ve started working outside the home, there hasn’t been as much time for the “Mommy School” activities that we enjoyed so much over the summer.  So after church today, when the opportunity arose for my kiddos and I to have some time to ourselves, we ran with it. 

First, we took a car ride to the home of some dear friends of mine to deliver a book to read.  My daughter had fallen asleep on the way there, but woke up wired as soon as we stopped.  They wanted to help deliver the book with me, so we all went inside.  When my children discovered that there was a feline in this house, the excitement level shot through the roof.

On a side note, I am predisposed to “giggling”.  In my training class at work, I earned the nickname “Giggle Monster”, for instance.  I can’t help it.  My sisters giggle, my mother giggles, and my grandmother giggled often, even (possibly especially) in the midst of unpleasant times.  I submit to you that the tendancy to giggle may be a genetic predisposition.  I could certainly prove it by my children today. 

When I say that they giggled quite a bit today, I’m not talking about a quiet, sporadic little chuckle.  This is eyes wide, continously bubbling, throw-my-hands-in-the-air-while -I-chase-a-cat giggling.  This is the kind of crazy, full tilt giggling sound that just makes you happy to listen to (and can cause you to wonder how the children are not hyperventilating).  The kitty tolerated this quite well.  I can’t help but wonder if she thought that my children were just over-sized, over-purring kittens.  For a while, Mrs. Jinx was quite taken with sniffing and listening to my children. 

Eventually the cat reached her limit of foolishness, and would walk away from my kids.  This is when the chasing began, adding the sound of clomping feet to the neverending giggling.  But it was when the kitty started swatting that the delight reached new heights.  Here was a game my children understand and love.

Eventually, I sidetracked them enough to leave.  My friend’s household was able to return to its peaceful state, after weathering the whirlwind of my children.  We went to a park to let them wear themselves out, and picked up all sorts of pretty leaves that were covering the ground. Then, we went home, cuddled in blankets while watching the movie “Labyrinth”.  After my kiddos went to bed, my husband brought home caramel apple shakes with some little sandwiches.   A good day was had by all.   

It was a nice way to end the week.

It’s funny how many adjustments my family has made since I’ve returned to the official work world.  I think my kiddos have actually had the smoothest transition, which is unusual on the spectrum.  I’m still learning what “Michelle, work edition 2.0″ looks like lived out.  My face is out of practice being a living canvas for make-up, and I don’t have corporate-friendly hair, anymore.  With all the steps I’ve taken, I’m learning how the work version of me coexists with the actual person inside.  I have actually shown pictures of my artwork to my coworkers, and had multiple opportunities to doodle and color at work.  It’s not an attention seeking, braggy sort of thing (with all the stepping-out-of-my-comfort-zone type stuff, I’m still entirely too comfortable fading into the woodwork).  It just seems like its the easiest invitation to step into my world for a while.

My husband and I are still “adjusting” to our role reversal.  

I was very pleased to see that my husband and kiddos had decorated our home for Halloween, and it was so sweet that my kiddos wanted to sing “Happy Halloween” to me (to the tune of “Happy Birthday”).  There’s even a Chinese Jack o’ Lantern hanging over our table.  My husband’s been doing a great job with getting dinner around and getting the shopping done.

I’m going to go get some drawing done.  Just need to get some stuff out of my head.  More to come, soon.